Friday, March 4, 2016

The Time I Got Invited to a Movie Premiere

Life is strange.

Yep, that's all I could come up with to begin this post. Thinking over the last 8 years, while life has been incredibly painful, confusing, scary, heartbreaking and downright insane, it has also shown me beauty, kindness, compassion, gratitude and an abundance of love. What would life be like had I never woken up that dreadful day with what feels like the never ending flu? Would I be happier, more successful, have started a family, and get to drink martinis on the weekends? When I think about these things, I also remember all the incredible and inspiring people I have met on this journey, the places I've traveled (many medical explorations), the time to reflect on the important things in life, a satisfying job that accommodates my unique needs...and now the opportunity to...drumroll...attend a real, live movie premiere in Hollywood!

What? Can that really happen? Those were my thoughts when this idea was presented to me by my sweet friend Laura. You see, Laura and I have never actually met in person but in the 21st century style, on Facebook of course. It was about 2 years ago when we bonded over the fact that we both had GP, on TPN, and had dealt with endometriosis in the past. We are the same age, like to find humor in the small things and both have a secret love for the "so bad it's good" show Pretty Little Liars.

Last fall she brought up the crazy idea that it would be fun to meet in person for the first time at the showing of Miracles from Heaven. This is a movie which has started a lot of talk, both positive and negative (hold on to your seats and you'll see why) about a young girl with severe digestive dysmotility who after years of restricted foods, medications, tubes, IV's and hospital visits (you know the deal), falls out of a tree one day and is, get this, cured. I'll give you a minute to gather your thoughts on this one...

If you are like me and many others living with GP or any form of dysmotility, you might get angry at the thought of this. You can't just fall out of a tree and wake up to eat whatever you want right? It's insanity and could completely misrepresent how truly serious our challenges are if someone can walk away from it all so simply. Another reaction sarcastically floating around, "Let's all go find this tree and take turns!" Yeah, the thought did cross my mind for a moment haha. However, from the families perspective, with the story originally written by the mother Christy Wilson Beam, it was God who performed this miracle when she hit the ground and why today, her daughter Annabel is completely free from suffering.

So this is where the tables could turn in either direction. We go north (heaven?!) and believe miracles do happen, putting faith in the idea that this is truly a story to rejoice in. Or we take the opposite view, turn it down and say that is absolutely impossible. Why hasn't God chosen to cure me or any of the other millions out there literally starving to death while surrounded by food choices? What scientific explanation can be given to why this trauma, a young girl falling so far to the ground, and getting better? Perhaps there is a brain-gut connection and the vagus nerve was jolted to work again. I recently listened to a podcast story about a woman with severe rheumatoid arthritis who, once she got alzheimer's, her RA disappeared. Hmm, life is strange right?

Honestly, I grew up in church believing in miracles but this is not easy for me to fathom. I'll leave that to you to think about, comment and share your opinion with.

Now back to Hollywood! As crazy as I thought Laura was for having this idea, she ACTUALLY made it happen. Having a childhood friend working in the movie industry, she made some calls and as of a few weeks ago we were sent the official invite to both the premiere and after party next Wednesday (eek!), March 9th. I'm writing this in a pretty calm state of mind, mostly because it does NOT seem real! But we do indeed have a flight booked, a VRBO to stay at and dresses to wear.
The only thing, and absolutely the most important, is that our bodies cooperate and allow us to get on those planes and make the event! AND, most most important, that we finally get a chance to meet each other in person for the first time, guessing with many tears, at LAX!

I've kept this mostly a secret because for one, it is quite overwhelming to think about. And two, because of my own reservations and those I've seen posted, about how this girl is suddenly cured, and how others may react to us taking part in such an event. Laura and I hope to share with anyone who will listen, what life continues to be like with dysmotility. We both have ports and use TPN to get most of our nutrients and at this point could not survive without it. So perhaps it is also a good chance to raise some awareness.

But the time has come and because no matter what, this is an extremely exciting thing to happen in my life. Because life has been painful, scary and insane, beautiful, kind, and giving...and well, very, very strange!

More to come as time unravel. For now wish us luck that we can make it there safely and on a good belly day. :)

As most of you probably know, ginger is a proven home remedy for nausea, vomiting and inflammation and a good friend to anyone with GP. Ho...

For TPN and EN Consumers!

If you have ANY questions regarding nutrition support (feeding tubes and central lines) please feel free to contact me at storres@thriverx.net. As of May 2014, I have been lucky enough to work as a Nutrition Consumer Advocate for ThriveRx alongside experts I believe personally saved my own life and passionate about helping others who can no longer eat enough to survive.